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Article about Xenos

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Jun 13th, 2021 (edited)
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  1. Translated by Caffeine@Slashnet, 2021-06-13 (contact in case of tpyos)
  2.  
  3. Original article: https://www.an.no/tor-39-dor-hvis-han-ikke-far-nye-lunger-de-har-gitt-meg-to-ar/f/5-4-1227254
  4. --------
  5.  
  6. Head picture: [0]
  7.  
  8. Title: Tor (39) will die if he does not get new lungs: -They have given me two years
  9.  
  10. Lead: He thought he just was in bad shape. But almost 10 years ago, Tor Ivar Pettersen (39) learned that he had a congenital heart failure. Now he is dependent on a lung transplant to survive.
  11.  
  12. Byline: By Silje Furulund, published 2020-07-05 08:45
  13.  
  14. Body:
  15. Tor has always been in bad physical shape. During his younger years he never managed to keep up with the energy level of his class mates. He did't manage to run as fast. He didn't manage to play football during recess. He didn't manage to participate in activities.
  16.  
  17. Everyone thought Tor was lazy.
  18.  
  19. -I was bullied a lot at school due to this. In addition, I was good at school, and had glasses, so that was not a very good combination.
  20.  
  21. Tor is visibly moved by the childhood bullying. As a child, he was ashamed by his own physical shape. He never felt good enough. As an adult he developed depresseion. He didn't manage to function in life, neither socially nor at work.
  22.  
  23. ## The shocking message
  24.  
  25. Almost 10 years ago, Tor reached a turning point in his life.
  26.  
  27. The then-28-year-oldd was troubled with acute headache, which resultet in hospitalization, full X-ray examination and a shocking experience.
  28.  
  29. First he was informed that he had experienced a small stroke.
  30.  
  31. Then came the message that it could be cancer which was spreading.
  32.  
  33. Then he was told that it could be HIV which had developed into AIDS.
  34.  
  35. * -I disappeared. It was an out-of-body-experience. Now my life is over, I thought. *
  36.  
  37. But after more examinations the doctors found that it was neither a stroke nor cancer nor AIDS.
  38.  
  39. The reason behind Tor's headache was an encapsulated infection in his brain caused by a non-corrected hole in his heart. A congenital heart failure.
  40.  
  41. [picture with quote, link [1]]
  42. "When I found out that it was a heart failure, it actually came as a great relief in my life. It was not my fault that I was in such a bad physical shape. I was not just lazy. I was ill." - Tor Ivar Pettersen (38)
  43.  
  44. Finally Tor had a diagnosis to relate to: Atrial septal defect (ASD). This means that there's a hole in the wall between the two upper chambers that exists in one's heart.
  45.  
  46. ## Too late
  47.  
  48. When Tor's congenital heart failure was discovered after 28 years, it was too late to operate on it [just like that/without further ado].
  49.  
  50. Because the heart failure was not discovered as a child, he had developed Eisenmegnger syndrome. It is a serious condition where the pressure on the right side of the heart is higher than the left side, which is caused by the hole in the heart causing damange to the pulmonary artery.
  51.  
  52. -My lungs had adjusted to the whole in the heart. If they close the hole in the heart, without giving me new lungs, I'll expire. That's why they can't just fix my heart, I need new lungs as well.
  53.  
  54. * But [fresh/healthy] lungs are hard to come by.
  55.  
  56. [picture with text, link [2]] In Norway, about 30 lung transplants are conducted each year.
  57.  
  58. [picture with text; nurse walking in a hospital hallway] The number is absolutely limited by the access to usable lungs from organ donors.
  59.  
  60. * -So please, become an organ donor. It is simple and you can save lives. *
  61.  
  62. Even though Tor learned about the heart failure almost 10 years ago, he was not put on the transplant waiting list before April 2020.
  63.  
  64. -The last years I have become worse and worse. There has been a gradual decline in the situation. The doctors would not put me on a waiting list before they believe I have 1-2 years left to live, so I surely have that now.
  65.  
  66. * This is caused by both the limited number of lungs available, and the risk of serious complications. The treatment is therefore reserved for patients with a final stage lung illness, and with a short expected lifetime, meaning 1-2 years. *
  67.  
  68. [picture with text, link [3]] **Breathing aid** Tor has become gradually worse, and for a year and a half he has been dependant on a CPAP machine to breathe at night.
  69.  
  70. [picture with quote, link [4]] "To me this has been a life saver." - Tor Ivar Pettersen (39)
  71.  
  72. ## Attempts to function in life
  73.  
  74. Tor has spent the most of his time in the past year within the four walls of his house in Bodø. He lives here with his little brother, who suffers from a rare nerve disorder.
  75.  
  76. -I function fine, but am receiving some help from the home support service [national service for helping out at home, including medical checkups]. My brother needs even more support than I do.
  77.  
  78. The flat is filled with home aids, exercise machines, game consoles and half-full Coke bottles. The walls are naked. The blinds are shut.
  79.  
  80. It is obvious that two young guys are living here, but young guys with a bit more challenges than most.
  81.  
  82. -We try to live as normal. As normal as is possible at least.
  83.  
  84. And IT has been Tor's rescue.
  85.  
  86. Even though he is on 100% disability benefits, he has been running the IT company "Mobilbørsen" ["the mobile market" or "the mobile (stock) exchange"] together with a friend in Oslo.
  87.  
  88. -We don't make much, but it does in any case give me a sense of accomplishment. Everyday life gets more meaning, and I feel like I am contributing to society.
  89.  
  90. [picture with text, link [5]] Tor is the front-end developer behind the web pages of Mobilbørsen. That means that he writes the code behind all that you can see and interact with when you open the company's website.
  91.  
  92. [picture with quote, link [6]] "Everything I know about coding is self-taught. It is very fun, but I cannot bear more than a few hours a day" - Tor Ivar Pettersen (39)
  93.  
  94. ## Stays active
  95.  
  96. Wile Tor awaits new lungs he attempts to stay as active as he can. This is vital.
  97.  
  98. -I need to keep in shape. The better shape I'm in, the better the chances of a successful [operation/surgery] and that I survive.
  99.  
  100. The last month he has worked out at least an hour a day. But he cannot move around so much without getting tired. Uphill and stairs are a non-starter.
  101.  
  102. -A few years ago I invested in an e-bike, so that I can get fresh air and get out on a longer trip without becoming exhausted.
  103.  
  104. And as many other men, Tor enjoys TV games. With the VR glasses he bought a month ago he can disappear into a virtual world -- and stay active.
  105.  
  106. [picture with quote, link [7]] "The VR glasses helps me stay active. I am playing an active game where I get my pulse up to the level it should be at."
  107.  
  108. [picture with text, link[8]] But long bike rides into the [forest/nature] is something that Tor is looking forward to when he gets new lungs - and becomes healthy for the first time in his life.
  109.  
  110. ## Healthy for the first time
  111.  
  112. If Tor gets new lungs in time, and surgery is successful, Tor will become completely healthy for the first time in his 39 year long life.
  113.  
  114. -It will give me a completely new life. I am imagining breathing properly, live as normal and function 100% in a job.
  115.  
  116. And not to mention, Tor can finally be more active.
  117.  
  118. -I am looking forward to be able to walk and go for long bike rides. Finally I can prove that I am not just lazy.
  119.  
  120.  
  121. Links:
  122. [0]: https://g.acdn.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/0000/avno/2020/7/2/13/DSC_0044%2B%25282%2529.JPG?chk=ACF622
  123. [1]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593761169000/avno/2020/7/3/9/DSC_0063%2B%25283%2529.JPG?chk=678599
  124. [2]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593762763000/avno/2020/7/3/9/NTB_hGPwPCKeo4Y.jpg?chk=A4A685
  125. [3]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593761344000/avno/2020/7/3/9/DSC_0029%2B%283%29_1.JPG?chk=E84FC4
  126. [4]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593761407000/avno/2020/7/3/9/DSC_0031%2B%25282%2529.JPG?chk=11AB03
  127. [5]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593763755000/avno/2020/7/3/10/DSC_0028%2B%25283%2529.JPG?chk=70BE1D
  128. [6]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593763771000/avno/2020/7/3/10/DSC_0023%2B%25282%2529.JPG?chk=427CDD
  129. [7]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593760333000/avno/2020/7/3/9/DSC_0010%2B%25282%2529.JPG?chk=C1A2CD
  130. [8]: https://g.api.no/obscura/API/dynamic/r1/ece5/tr_2000_2000_s_f/1593764895000/avno/2020/7/3/10/DSC_0042.JPG?chk=562331
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